Anyone using this?

Here is one website posted over on DSTNI

http://www.curingdownsyndrome.com/index.htm

While i am bothered by the title of finding a cure - because I don't think T21 is something to be cured - their philosophy is the same as mine - to find safe drugs to help our kids brain function and improve memory and learning - not unlike drugs for ADHD or depression.

I went to the Stanford presentation discussed here and did not hear Dr. Mobley mention Ginkgo Biloba (or any other drug by name) but I know they are testing some. Someone asked Dr. L and he said something about it having Biloba and recommended a brand - Ginkgo Gold.

I was just at my local vitamin shop and got some of the Ginkgo Gold 60mg. There are several types that are just Ginkgo so beware of that if you are interested. I am weary of the Prozac part and am not doing that at this juncture, but am going to start the GB.

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

That is very interesting. I didn't read what they said about Prozac and like you, I am not interested in doing that at all. I would be interested to hear what they are saying the benefits are though. How are you going to do the dosage? How will you know when it is enough? I am going to e-mail Dr. L and see if he has any thoughts. I think I might try it as well. thanks for the info. I need to take some myself.

Kayla

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Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

I keep telling my husband that I'm going to buy him the Ginko Biloba for HIS memory problems...............but he'd never remember to take it, ha ha ha ha. Hope it works for you.

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Vonda, mommy to Peyton, Sophie, Noah(Ds) and Halle

Wasn't it Homer Simpson who says "Duh, I keep forgetting to buy so Ginkgo Biloba!"



The prozac stuff is under the heading neurons, neurons, neurons.

They suggest that the dosage is 2.5mg for every pound of child. The Ginko Gold comes in 60mg and 120mg tablets so i am going to start with a 60mg a day. They then say that it could be different with every kid?!?

The Stanford Presentation was mostly over my head but in essence what this and other drugs they are researching are trying to do is turn down the overproduction of certain chemicals in the brain (GABA is one) so essentially the neurons can do their job better and thus help memory and learning abilities.

One of the scientists described it like this - If you are driving from Washington DC to Baltimore you need both the road to be in good order as well as your car to be okay to get there everytime. A glitch in the road or in your car and you won't always get to your destination.

Gingko Biloba MAY be one of those things that helps turn down the production of GABA and thus in theory the neurons would be able to "make the trip." But the proof at this point is all anecdotal...

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

I did go to a site that gave some medicines that it might conflict with. I can't remember the names, but one of them was for seizures. So, I certainly check out the problems with medicines before I gave it.

Kayla

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Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

Liz,

Have you tried this yet? I haven't but am planning to soon. I have been traveling a lot and plan to when I am going to be around to watch him more closely.

Kayla

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Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

Yes, I think Eliza's been taking it for 2 weeks or so but i can't remember I haven't really noticed any difference one way or other but Eliza has started to do some new stuff in the last 2 weeks (like pointing out body parts and more signs and new babbling noises) so who knows! But there haven't been any negative sign affects...

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

You may want to talk to a doctor and get a dosage good for age/weight of child. Also try taking it and see if you feel any side effects from it. I only say this because I tried taking it a while back and I didn't like the way it made me feel. My head felt creepy crawly and I was a tad dizzy from it. I tried taking it for a while but couldn't get over the side effects.

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Traci, mommy to Spenser 14~ Ashlyn 9 DS~ Mason 8

My sister was taking gincko for a while and developed seizures! She was taking some other supplements or something that it reacted with. So definitely beware.

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check out my blog, "A World of Difference":
http://tinyurl.com/p8auz

Dr. Leshin contacted the Stanford group regarding the website posting gingko biloba as a "cure" for DS and posted this response on another list serve.

"I have heard from the DSRT Foundation, and they do not support statements of therapy made on this website. There is no evidence of efficacy or safety at the present time.

The website states that they are in talks with the Lejeune Foundation in France about research on ginko and DS; I hope this is sincere."

I would add that GB can have a variety of side affects including nausea, headaches, decreased blood clotting etc.
Haemophiliacs in particular should be wary of using it.

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Darryll

Dad to Joshua (3) and Isabelle, DS, 1-09-05

We have stopped using this currently with Eliza. We used a lower dose for about a month and her babbling and overall vocalization was definitely better. I really noticed it like 3-4 hours after taking it. I also took the dosage recommended for my weight and felt a difference but not necessarily 100% positive. I felt my mind was racing and definitiely more alert, but I also felt scattered and kind of all over the place, like i couldn't concentrate on one thing.

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )